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Central Sensitization - please share your stories
Chronic Pain | Last Active: Nov 18, 2024 | Replies (160)Comment receiving replies
i have been in and out of emergency rooms and spine centers for 20 years. Only recently it was a APRN, DNP that concluded it was CSS. i have had instances where i can not even get my body out of bed or off the floor. My last major incident i merely stepped off a curb and it felt like i was hit by lightning. i was immobilized on the ground but was lucky enough to have some construction workers near by to assist me up and it took a couple friends of mine to put me in the vehicle and take me to the nearest ER. There they pumped me full of solumedrol and tordol and told me to rest. ALL my mri imaging that was reviewed by MD's only showed mild scoliosis and straightening of lumbar region as well as degeneration and spurring. i use a device to put my socks on every morning when i feel like i need socks. i can not stand for more that 30 min or sit for more than an hour without extreme escalationg pain. The head of neurosurgery said plainly "you have a Piece of shit back" there is nothing surgical we can do. Go home and dont even do physical therapy until you can stand up straight. That was a year ago and i am still compensating for the pain by putting all my weight on one leg which is causing numerous other issues. Was turned down for disability last week even though i can not get the dishwasher unloaded without taking at least one break to let my muscles relax. i am currently now in PT with a very good provider. They would not even do light tissue massage on my first visit because of the extreme number of spasms and contractions i was having even after just waking up that morning.
nowhere for css patients to go for support. Not sure how carpal tunnel qualifies as a disabling condition and css does not but i am now on the road to losing my mouse, vehicles and sanity dealing with this as i have not vbeen able to work since 2/2021
Replies to "i have been in and out of emergency rooms and spine centers for 20 years. Only..."
Hello, and welcome. I'm so sorry to hear about your struggles. You're right, it's extremely difficult to find true and integrative support for central sensitivity syndrome, but help and strategies are out there. For me personally, a chronic pain program similiar to the program offered at Mayo Clinic or Shirley Ryan AbilityLab (formerly the Rehabilitation Institute of Chicago), closest to where I live was not a practical or the appropriate choice. I found help through a physical therapists knowledgeable in how to treat central sensitivity; personally I found the most help from PTs, but it's still difficult to find someone knowledgeable (I find many providers know "of" central sensitivity, but now how to treat it--and that actually goes for the PTs I've met at Mayo as well).
Since your quality of life seems so limited, Mayo's pain rehab program could be a really good fit. If not, maybe a PT. Would you be willing/able to pay out of pocket for virtual PT? I know of a few who are familiar with central sensitivity in private practice and do telehealth. They give you a superbill you can submit to your insurance if applicable. If you're interested, let me know and I'm happy to direct message you their information if you want to look them up.
The second thing I'd try would be Graded Motor Imagery, specifically you can start with Right/Left discrimination, because it's something you could do on your own without moving your body and without a therapist. Despite what your neurosurgeon said, there IS physical therapy you can do before you can stand up straight and without movement--it's based on mental movement and neuroplasticity--our brain's ability to form new connections and heal.
Without getting stuck in the weeds, often with chronic pain your brain loses a strong connection with your most painful body parts--it sounds weird, but the approach is evidence-based. Something as simple as doing flashcards where you have to identify whether the left or right side is pictured helps your brain rebuild that connection and can improve your pain). There are apps you can get on your phone for the applicable body parts. This is the company, but you can also do a search for research if you're interested: https://www.noigroup.com/graded-motor-imagery/
I was totally skeptical but willing to try anything, and I made more progress in 3 months working with my PT on graded motor imagery than I'd made in a year with someone else.
That would be my two cents on things you might be able to try to start getting back more of your quality of life. I'm kind of assuming you've already gone the conventional route, and those are 2-3 things that I wish someone would have told me when I was in so much pain. There are resources and strategies out there, but you're right and it's very difficult to find them. But there is help out there.
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@jhubler72 Hello and welcome. My heart feels for you, having been there myself with CSS. I'm attaching another conversation that I participated in earlier today with a link to watch a video from the Mayo Clinic pain Rehab Center about CSS.
https://connect.mayoclinic.org/comment/869801/
Please get back to me with your thoughts I hope the video means as much to you as it does to others who first watch. I anticipate your response and we can chat further. Keep the faith there is hope.